The stupidest thing!

[Redsaber]

People can say the worst things! Especially when it comes to something they do not understand. I had to leave work one day - which happens more frequently. One of my bosses asked "haven't you got this taken care of yet." like I have total contol of my epilepsy! It made me so angry!!! Has anyone else had stupid comments from others about your epilepsy?

 

[bazpa]

It has become obvious to me that if people cannot see a physical disability, they cannot seem to understand that there is one.

 

[Cint]

The response I hate the most when I tell others about my epilepsy is, "You look normal." I feel like replying with, "Oh really?!! Hmm.... tell me, what does normal look like?" Sometimes I wish a seizure upon everyone in the world, just to give them an opportunity to see what some of us go thru. At least let them witness at least one in their lifetime.

 

[bazpa]

It is awful to say I know, but I wish some people could experience just a couple of days in my life, just so they would get it. I am just cranky I guess! If a stroke victim in a wheel chair was in front of them-they would not think to say anything about their condition or tell them to just get up and walk-your fine.

 

[epileric]

I can relate to knowing how it feels to want someone to experience what I'm experiencing.

I've had some of those remarks as well as "if you had a positive enough attitude your seizures would stop" to "don't you have medication?" and when I answer "yes" they replied "so why don't you just take a pill when feel a seizure coming on"?.

I know these people might have the best of intentions but as I heard someone once say "The stupid.... it burns"

 

[bazpa]

I also wish I could just take a pill, and get better. The first 6 weeks were like a miracle. I felt like myself again, wanted to do things and be with people. It has been a down hill slide since then. My seizures have changed, and I feel worse than ever. Add to it that I don't thing I have ever been this cranky in my whole life. My poor friends and family. I know they are trying, but it is just so hard for me to explain, and for them to understand. They are doing the best they can-I know.

 

[Chel]

I have a few in my life who say "are your seizures under control yet?", and I've tried explaining that they probably never will be, that tle is very difficult to control, blah blah blah. It doesn't go in their heads. Unless I drop in front of them, they will never believe it.

If I'm of a mind to, I'll say "I just had a seizure" if I had a myoclonic jerk, lost my train of thought, couldn't speak, etc. while we were chatting, or need help on a "bad brain day". Interestingly, one of my friends, whom I thought would be the toughest barrier, said while we were talking, "you just had a seizure, didn't you?", and I had. Turns out one of his workmates has tle, so he's very "tuned in".

Education, education, education.

 

[CrunchyFrog]

It's an invisible condition, most people who've never had any experience with Epilepsy don't understand that you can't just think positive and control it. And it's not something you can just get over.
People think I'm weird or stuck-up because I don't drink when I go out I try explaining to them that I can't drink because I have Epilepsy and some people shrug it off like I'm just making an excuse and being a sook.
I wouldn't wish Epilepsy on anyone, but sometimes I wish people just knew what it was like to wake up in hospital and not know what happened. There is a lot of ignorance in the world.

 

[seizingbeauty]

I started a new job in December so it was all about the education of my co-workers. It was fine til I showed up on day for work after I had a seizure and couldn't remember how to do my job. People understood the pain and the fatigue but couldn't understand that 8hrs later my brain was still turned off.

 

[Nakamova]

It might be worth giving them a handout explaining what the seizures can do. Or having another education session...

 

[Redsaber]

I have lost three whole days after my first grand mal. Still the thought scares me.

 

[stephanieholly]

I've had some stupid things said/done to me too xxxxx

1."you dont look like you have epilepsy" is a common one for me.


2.People flashing lights at me on purpose to see if I drop to the floor... doesnt work like that because Im not photosensitive... silly people.

3. Being told im a "wet blanket" for not going out drinking.... sorry but i dont want to risk it....


oh people are uneducated about it x

hope it gets better soon chick x

"

 

[Chris515]

I've had some stupid things said/done to me too xxxxx

1."you dont look like you have epilepsy" is a common one for me.


2.People flashing lights at me on purpose to see if I drop to the floor... doesnt work like that because Im not photosensitive... silly people.

3. Being told im a "wet blanket" for not going out drinking.... sorry but i dont want to risk it....


oh people are uneducated about it x

hope it gets better soon chick x

"

If someone flashed lights on me on purpose I'd probably hit them... lol. I'm really photosensitive. I can't believe someone tried that on you!! not cool.

I've had to deal with the wet blanket label for a long time as well. For me one or two beers is fine, but to get wasted, it's not worth the risk. It did affect my life quite drastically when I was younger. When I was 15 all of my friends 'discovered' alcohol, and would drink every weekend... that was the cool thing to do. I couldn't go along with that so basically I just faded away and had to find new friends.

Conform or be cast out.. - Geddy Lee, Rush. (Awesome band)